Foggy head

[Alison300356]

Hi all new to site first post yesterday. Is my foggy head something to do with prednisolone or is it the PMR also is insomnia another symptom of the PMR

[DorsetLady PMRGCAuk volunteer]

Hi,

Short answers - yes, yes and yes!

I always called it Pred head, but both can cause it. Most people get insomnia at the beginning whilst your body is trying to adjust to all that cortisone raging around your body. Normally your body produces around the equivalent of 7 to 8mg every day, so you’ve suddenly doubled at least that amount, sometimes a lot more. Hopefully it should reduce as your body gets used to it and you reduce the Pred.

[Alison300356 in reply to DorsetLady]

Thank you for the very quick response. The "Pred head" seems to kick in about an hour to an hour and 1/2 after I've taken the Prednisolone so does make sense. The insomnia was always a problem due to night sweats which I and GP put down to menopause but am wondering now if it could be due to PMR. I had a spell about 18 months ago where I couldn't lift my arms to even brush my hair which GP also dismissed as menopause. This was a different GP from the one who diagnosed PMR, so much seems to be making sense of the PMR diagnosis.

[1Purplecrow in reply to Alison300356]

Hi Allison, I'm so happy thar your pain has reduced with treatment.

Regarding the other things... brain fog was a challenge in the beginning..it does get better! ....Also, sleep ---less nights when I managed only a couple hours at a time and sweating accompanied the whole slurry of symptoms, and I kept fresh sleep shirts nearby so quick change was easy.

Once I discovered that these symptoms are part and parcel of the whole PMR experience, I was able to roll with them, and not stress about that which I could not change/control.

Two things... a daily nap, ...every day...helps ease the fatigue accompanying the lack of sleep. (Its like a little treat...knowing I could lie down, and read or sleep for an hour. ) Also, I told people about my pred-head, and let them back me up when I needed help.

As has been said before, this PMR disorder is not life threatening...but it is life changing!

Kind regards, Jerri

PMR, diagnosed OCTOBER, 2013, currently 5 mg pred.

[Alison300356 in reply to 1Purplecrow]

Thank you, I have tried to resist afternoon napping in the hope that I would be tired when I actually go to bed at night and have a good nights sleep, maybe I'll rethink that. I have yet to tell people of my diagnosis I don't understand it all myself at the moment and can't face trying to explain to others yet. Lastly I said exactly the same to my partner "well it isn't life threatening " I just have to go with it!

[SheffieldJane in reply to Alison300356]

I resisted too but my naps do not impact on my night sleep and they let me have an evening.

[Brixhamhampster in reply to SheffieldJane]

Sheffieldjane I agree with you about the naps. I actually sleep better at night after a midday nap as I am not overtired.

[PMRpro Ambassador in reply to Alison300356]

Remember what we used to say about the children when they were little? "Past tired..."

[gannie in reply to Alison300356]

I also suffered insomnia in a big way when I started on 20 mgs of Pred and was waking up at 4.00 am wide awake and raring to go. In fact, the Pred caused me to be totally manic and euphoric which caused me to go on a wild spending spree. It's amusing when I think about it. With the reduction in Pred to 10 mgs my mood has stabilised and I am sleeping normally.

[Alison300356 in reply to gannie]

I can so relate to that!

[SheffieldJane in reply to gannie]

I know it was great wasn't it? The only time I interested the GP, he was so keen to stop it as I raved about his colleague's genius in diagnosing me. I also did 2 am on- line shopping buying my grandson a beautiful , realistic, toy,

German made, farm animal by animal ( must have more pigs etc.). Best time I'd had in ages. It is stunning and insane. 😂 And horribly expensive.

[Sandy1947 in reply to DorsetLady]

In addition to Pred head I have a ruthless lack of patience....even worse than Pre PMR. At 17 mg Pred. Will this improve or do I have to go to Yoga and meditation which I hate?

[DorsetLady PMRGCAuk volunteer in reply to Sandy1947]

Yes it does decrease - but I think it also increases with age - so we can’t win either way 🤦🏻‍♀️.

Just count to ten, and smile sweetly! It sometimes works.......but on the other hand.......

[Sandy1947 in reply to DorsetLady]

I’ll try to smile instead of biting people’s heads off!

[PMRpro Ambassador]

Yes to both. I couldn't sleep properly with PMR without pred, many people can't sleep when taking pred.

Most autoimmune disorders cause brain fog so you can blame the PMR - but some people get brain fog with pred.

It will probably improve as you reduce the dose and get used to being on pred - it is quite a shock to the system.

[Alison300356]

Thank you for your reply. I wasn't sleeping well before I was diagnosed. GP prescribed amitriptyline initially thought it was pinched nerves in my spine took bloods and here we are! Hoping to cut out the amitriptyline, had only been on it a couple of weeks so shouldn't be too much of a problem. Just have to learn to be kind to myself.

[1Purplecrow]

Allison, at the top of this page is a search bar...type in the word insomnia, and you will find years worth of discussion on this subject. Might be helpful. 🙃

[SheffieldJane]

Yes Alison it is, all of that and in my case a predisposition to foggieness under any kind of applied pressure to perform. Revenge of the quite clever really.

Seriously my head feels literally as if it's full of cotton wool and I forget the names of actors and films I've seen and as I've said before Unicorns 🦄 matter when you have a 4 year old granddaughter who likes fairies and those horse things.

[Riversnan]

Hi Alison,

I take amitriptilyne to sleep but only when I am needing to, and if I don’t take them regularly, when I do I get a really good night s sleep for a few nights. That way I develop a better sleep pattern for a short time. I find if I take them for a longer time I get used to them and they don’t seem to work as well.

I am having to up my pred dosage from 8 to10 as I am away on a photography trip and thought I was ok, I am getting all the pains in relevant places and only on my second day today, could have to go up further before the weeks out. It’s such a shame because i was on 6.5 in May.

It’s my own fault as I don’t slow down and give myself a chance, I have decorated my lounge and had a couple of reasonably active holidays this summer. I am so grateful for this forum as I am managing this myself, I prefer to use you all as a guide as my doctor seems very laid back and doesn’t really seem to know much about this PMR.

I know I shouldn’t be doing a lot of things but we are a long time dead and I have lots to keep up with. I do rest when I can and I am ....reasonably sensible.

I don’t know if I am going to be able to do all I wanted to on this trip, but if I manage some of it I will be happy.

I think if I had been ( a good girl ) and been sensible I may have been on a lower dose by now, so don’t take a leaf out of my book as I am wrong to do these things. I am having a worse time at present with foggy head but I think it’s because I am not considering my condition.

I wish you all the best and a quick recovery and hopefully some good nights sleep.

[Alison300356 in reply to Riversnan]

Thank you. You sound a lot like myself I know I am trying to do too much but just not in my nature to rest for too long. Am going to have to start relaxing a bit more!

[nevagivup]

I know that for some people the brain fog and insomnia decreases as they reduce the dose. Not in my case, it persists along with dizziness, but that may be because I have had many, many relapses and now on 3.5 mg I am not recovering. We all have different experiences in the way our bodies deal with the Pred and PMR.

[Sandy1947]

Rheumy said to take 2 Advil PM which helps me sleep from 9-3:30 when I fly out of bed in anticipation of 5 am Pred dose!